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Rare cancer? GB paracyclist on the disease that nobody is trying to find a cure for

Liz Clarke-Saul knows fund-raising efforts will not save her life but says somebody has to talk about adamantinoma

11 July, 2019 — By Richard Osley

Jack and Liz Clarke-Saul got married twice last year

WE think “Why her?” all the time, so why shouldn’t she think “Why me?”. Why Liz?

The odds are so outrageously miniature: the fittest member of our family, a cyclist who has proudly represented Great Britain in world championship races, somebody who ate the right things, did more exercise than anybody I know, defied the amputation of her foot, and yet is living with the uncompromising misfortune of rare cancer.

“Rare cancer” has more or less become a catch-all newspaper term that glides over descriptions of any variety of this bastard of a disease not affecting the bowel, breast or prostate.

Liz Clarke-Saul, my girlfriend’s cousin, can pinpoint a fair definition. One per cent of all cancers in the UK are bone cancers, and one per cent of bone cancers are adamantinoma, the menace which attacked her first when she was a young girl and has now returned with new designs on killing her.

So rare you’d never heard of it since the last sentence, she had more chance of winning the lottery.

“I don’t find it a healthy way to live, to dwell on how unlucky I am because it’s not productive,” she told me last week. “Our mantra really has become: you might get hit by a bus tomorrow, and you could. Stuff happens to people all the time. I made the decision very early on that whatever time we have, I want it to be as good as possible.”

She added: “People will say I’ve never asked: ‘Why me?’ but you definitely ask ‘Why me?’. And it’s fine to answer that question and say ‘It’s not fair. Why is it happening to me, us and our family?’. It’s not fair, but saying it’s not fair is not going to get us anywhere.”

The adamantinoma has been found on some of her ribs, her vertebrae and her lungs. She is now having three-month scans to check its advance. But, at 30, no age, she has been told it is now incurable.

Pharmaceutical companies usually target their research on more common forms of cancer. Big national fundraising events concentrate on them too. That’s a percentage call and perhaps understandable, but Liz is on the wrong side of the margin and it feels hard. I’d write “unfair”, but see above as to why I shouldn’t. It won’t change things.

Liz, who works at Bidborough House in King’s Cross doing communications for UCL, had her first encounter with adamantinoma aged 12. She fell during athletics, running a hurdles race. Her ankle swelled but could not be tamed by ibuprofen. Then it was thought there was a troublesome cyst on her ankle. She had surgery and spent two years as “the girl on crutches” in her school.

As more specialists took an interest, it was slowly realised that the bubbled appearance of the bone was actually adamantinoma.

At 14, she opted for her leg, below the knee joint, to be amputated. She had been told the only alternative was metal plates that might have needed regular surgeries throughout her life, without guarantees of success.

“When I was first diagnosed, one of the doctors said to me: this means you’re really special. Even at age 13, I wanted to punch him in the face,” Liz said. “It doesn’t. It’s crap. Because you are in such a small number, it also means there aren’t treatment options. I’ve been treated by some of the world’s best – I’m grateful for that – but to a certain extent the oncologists don’t know what to do for me.”

Liz Clarke-Saul is part of the GB paracgcling squad; her foot was amputated during her teenage years [Photo: Jeremy Saul]

For many years, it appeared as if the adamantinoma had been stopped in its tracks. Liz, wearing a prosthetic leg, caught up on school and went to Sheffield University – and, apart from losing a few shoes on nights out, enjoyed the student experience.

Some nerves over whether people would want to be friends with her, or “fancy her”, subsided, and she met Jack there.

They married twice last year: once, soon after diagnosis, when there was real uncertainty about how fast the adamantinoma might spread. Liz feared, and she puts this frankly, being “a bald bride” if she waited until their planned big day in September.

When the autumn came, Liz was ok and we did it all again, celebrated. She danced Steps routines from the 90s with her parents, sister and brother. The group’s songs are terrible, but on that night, you didn’t want the music to stop.

Everybody says this about friends who are newlyweds, but you couldn’t imagine a more loving couple than Liz and Jack, and he was there as the supportive soigneur on the sidelines as her career on two wheels blossomed. Liz had been inspired by what she had seen at the London 2012 Paralympics and was later talent-scouted.

She went on to race for Great Britain in Europe and South Africa, winning a medal in a World Cup race and only narrowly missing out on the Rio games. No wonder she thought the adamantinoma was behind her. She was discharged from hospital after 10 years of clear scans. No rare cancer.

“You start to feel a little more indestructible: I’d had this and went through it but it felt like a long time ago,” Liz said. “I think my experience will probably change practice for follow-ups in the future and they won’t discharge you.”

Liz on an early ride and, below, on crutches

By 2018, her cycling form was not dropping but also not improving compared to the effort she was putting into six days a week training. Next year’s Paralympics in Tokyo had been the target; I’m biased but she would have done the country proud.

There was a cough, though, maybe a chest infection, and it wouldn’t go away. A build up of fluid was found on her lungs, and later came a devastating scan.

“They said the ribs on the ultrasound looked a bit bubbly, which is exactly what they had said with my leg when I was a girl,” she said. “I think because I was as fit as I had ever been, it went undetected for so long. With someone who had average fitness, if they had as much fluid as I had on my chest, they would get pain walking around and breathless. I think it had been there for a long time.”

She added: “If it’s going to come back when you are training six days a week, barely drinking alcohol, not going out, sleeping and eating really well, then I don’t think there is anything I could have done to stop it coming back.”

So what now? There is no textbook to reach for on the shelf. While research is being conducted into bone cancer and possible cures, adamantinoma is a mystery that nobody is currently working on solving.

That’s why Liz, and her family, have launched the Liz Clarke-Saul Fund with the Bone Cancer Research Trust, a first step. The fund will pay for ideas on how treatments may be uncovered in the future to be investigated, a sort of preliminary to any trials or tests. There’s been quiz nights, Jack is to run four marathons in a month for sponsorship, the target is £20,000.

“I’m under no illusion that this is going to find a cure in the next year and save my life, as much as I would like it to,” she told me. “In the future, there has to be hope that we will at least have treatments that prolong life and eventually find a cure, but that’s not realistic for me.”

I’ve heard her say a few times: if I don’t talk about adamantinoma, who will?

“Research into treatment into bone cancer is moving at a much slower pace than other cancers,” she said.

Her next scan is coming up this week; almost in defiance she and Jack cycled to Brighton on Saturday, although at a more sedate pace than when Liz was bossing road races.

“I still think about what I could have achieved if this wasn’t happening in my body, but I try to think about the positives of not training all the time, like seeing friends more than I ever did,” she said.

“Otherwise you can get in a really dark hole that you’ll never get out of. I can’t spend every day thinking: ‘If only I was..’ I have to think how lucky I’ve been to have had the friends, family I’ve had and Jack. I can’t imagine how horrendous it would be to go through this alone.”

Celebrate turning 30, it’s a privilege

LIZ Clarke-Saul’s friendship group, like her, have or are about to turn 30 this year and with it comes a familiar lament about life flashing by and all of a sudden that feeling of getting old.

You can understand why she feels a little different.

“People should celebrate their birthday, celebrate getting old,” she said. “Don’t look at 30 as being some awful sentence. Being able to celebrate your birthday and growing old is a privilege.”

It’s advice that sings from a carpe diem spirit, guiding her through. She asked only once, right at the start, whether doctors knew “How long have I got”.

They did not know then, they said, and she has resolved not to repeat the question.  “Right now I don’t know what I would do with that information,” she said. “We are trying to make the most of everything, every day, every week – and I don’t think that would change if they said you’ve got five years or five weeks.” She added: “One of the reasons why this feels so crap is that there is so much we want to do as a couple, things we wanted to achieve, and then you don’t get to do it. So I try and tell people – why wait until you get really bad news, to do all the things you want to do. Do them now.”

l You can support the Liz Clarke-Saul Fund and research into adamantinoma at: www.bcrt.org.uk/get-involved/tribute-funds/the-liz-clarke-saul-fund

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